Inspirational Stories

In Patient Unit Provides Lifeline

Karl Cholmondeley-Smith is living on borrowed time. Since childhood he thought his right forearm was particularly muscular but three years ago it suddenly swelled to the size of his thigh and he then realised something serious might be wrong.

It was the 6th of August 2007. An MRI and biopsy confirmed that 39- year old Karl had alveolar soft part sarcoma, an extremely rare cancer that usually starts in childhood. Because the cancer had spread to his lungs, his prognosis was grim with a life expectancy of three to six months. Although Karl outlived that sentence, in September 2008, the cancer spread to his brain, leaving his doctors scratching their heads and wondering how he is still here almost two years on. The tumours in his brain cause Karl to suffer from seizures which are currently being controlled by medications.

At the time of his diagnosis Karl had a great job working as a stage rigger which enabled him to be backstage during big concerts like U2, The Corrs, and Santana. He was about to go on the road with Cirque du Soleil when the diagnosis on his arm stopped his career in its tracks.

"There are days when you just can't hold me down and then there are days when I've just wanted to give up" Karl says.

It has been a rollercoaster ride for Karl. Recently he has felt well often enough to take up gardening, mow his lawns and plan a fishing trip, but it's been a long struggle to get his medication right.

The Hospice palliative care team have worked hard to keep Karl's pain tolerable without sending him back into the mental fog that he experienced for the first year of his illness. It has been a long experiment juggling medications and their levels, to ensure the pain is being held at bay while maximising Karl's quality of life.

The Hospice In Patient Unit is Karl's lifeline when he feels really unwell. To date he has been admitted four times to stabilise his medication.

The staff in the Unit have also helped with his diet and the cooks are old hands at preparing individual meals for a tender stomach.

"They always give me a nice room with Sky TV, an en suite and a view out to the lake. It's like a hotel" Karl says.

"There were times when I couldn't eat for two or three days and luckily they had a couple of people who suggested I try smaller portions and lots of them, starting with something simple like a tablespoon of yoghurt or mashed potato."

Karl is also thankful that he is able to telephone Hospice and speak to a nurse any time of the day or night.

"On more than one occasion I have woken in the middle of the night or wee hours of the morning in a great deal of pain and I haven't been sure what to do. So I pick up the phone, dial Hospice and talk through my concerns and discuss options with one of the fabulous nurses".

Since Hospice became involved with Karl's care, he has been a regular and much-loved participant in the Wednesday Day Group at Shea Terrace. Unfortunately, due to Karl having a history of seizures and blackouts, he is no longer able to drive so a volunteer – who Karl says has adopted him – drives him there and back.

At 39, Karl is the youngest member of the Day Group. He smilingly stood a bit of teasing when he turned up with a Mohawk-style haircut – courtesy of another Hospice volunteer – and reminded the teaser that "life's too short to be boring".

"At first it was hard to accept, being the youngest, but now I've known a lot of them for over a year and we're all one big family. We get the occasional new ones who spend a couple of sessions and then they're hooked as well" says Karl.

Karl says he's not artistic but he enjoys the art and craft sessions, although the group's real strength is in its camaraderie: "I don't feel so lonely in my illness."

Hospice's Family Support team has also been key in keeping Karl positive. The counsellor is in weekly contact and Karl says the sessions definitely help.

"I used to put on a false smile and say it's all good, we'll get through it. Now I've got through three years but without Hospice I'd be up the creek without a paddle, I would have given up a long time ago."

Karl checks off all the ways Hospice has helped him: support groups; counselling; medical care; dietary advice; referral to specialists; and someone to talk to 24/7.

"I have days where it's a real psychological battle to take my medications but Lori (Karl's partner) will lay it down straight for me - "take your pills and be sleepy or don't take them and be in pain, your choice"!

"Only Lori and these guys have kept me sane and my head above the ground. They're the ones I trust and know I can rely on for support."

"I want to give a heartfelt thank you to everyone that I've met on this journey, all Hospice and hospital staff, friends and family but also friends that I had met through Hospice and sadly lost from this disease."

Lesley Ingham